While seated in the waiting room I was asked if I’d be a healthy control for a research study and fill out a questionnaire. I agreed to do so. It was a multi page questionnaire inquiring about how I was feeling. At the time I considered myself to be feeling pretty good.

Life was better than good; I had a great job working as a medical photographer for a highly regarded hospital and a rapidly growing medical illustration freelance business. So too did I have a fun social life, my love of sailing, playing tennis, traveling, etcetera. Life was a blissful roller coaster ride of high energy output. I was thriving.

Part way through the questionnaire was a question asking if I regularly felt fatigued. Well of course I was; I was working around 90+ hours a week and living a non-stop life outside of my work.

Then came the phrase “chronic fatigue syndrome.” My initial thought was, “What the (____) was that. In my work I’d seen thousand of very sick people with horrible diseases; that chronic fatigue syndrome didn’t even sound like a real disease.

A couple years later I was suddenly stricken with severe symptoms that the doctors initially felt might have been caused by a stroke, brain tumor or multiple sclerosis. One side of my body was numb and my brain was so muddled I couldn’t remember my wife’s name and was getting lost in my own home.

I was admitted to the hospital, put on an intensive care floor and proceeded to have days of seemingly around the clock medical tests to try to figure out what was causing my condition.

At one point my internist returned from a trip and took over my care. His name was Anthony Komaroff.

After eight days I was to be discharged from the hospital. Tests had revealed lots of medical abnormalities including encephalitis, white blood cells in my spinal fluid, immune irregularities, and severe cognitive impairments. No definitive diagnosis had been figured out although lots of diseases had been ruled out.

Doctor Komaroff’s verdict was that I had chronic fatigue syndrome but that the diagnosis could be made official until I’d had it for six months. Six months? I couldn’t imagine having the hell I was living with for that long. That was 24 years ago and the years of living with the illness are still clicking by.

It turned out that question I’d filled out years before was part of my being a healthy control in a chronic fatigue syndrome research study. How ironic. At the time I had had no idea that Dr. Komaroff was involved in chronic fatigue syndrome research, nor had I ever heard of the condition.

One thing is clear. I sure hadn’t taken the condition called chronic fatigue syndrome seriously until it pulled the rug out from under my world.

So here we are 24 years later and that ridiculous name is still with us.

Still the health department continues to inadequately address the illness and seemingly still clenches onto flawed negative bias about it. Still there is obscenely little money being spent conducting biologic research on the illness.

Still the public and the media also have blatant misperceptions about the illness.

Still lots of people are contracting chronic fatigue syndrome. And still more and more ‘old timers’ who got the illness in the 80s and 90s are passing away, in many cases for secondary complications.

To use the title of a movie, “Something’s Gotta Give.”

John Herd, 2012May be reposted with prior permissionFeel free to respond to me via:
johnherd@johnherd.com